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Courtenay R. Bruce, JD, MA; Trevor Bibler, PhD; Andrew M. Childress, PhD; Ashley L. Stephens, MA; Adam M. Pena, MA; Nathan G. Allen, MD
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FINANCIAL/NONFINANCIAL DISCLOSURES: See earlier cited article for author conflicts of interest.

CORRESPONDENCE TO: Courtenay Rose Bruce, JD, MA, Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Mail Stop BCM 420, Houston, TX 77030


Copyright 2016, American College of Chest Physicians. All Rights Reserved.


Chest. 2016;149(6):1577-1578. doi:10.1016/j.chest.2016.02.677
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Dr Terry has commented on our article in CHEST, where we provide a conceptual framework for how clinicians could approach situations when surrogate decision-makers interpret patients’ wishes differently than what is expressed through patients’ advance directives (ADs). We thank our colleague for his comments and for supporting our analyses. As clinical ethicists, we believe we cannot formulate ethically sound frameworks unless they are (1) practical frameworks, (2) tied to well-established ethical concepts, and (3) grounded in empirical evidence. Thus, we are aware of data suggesting that patients would welcome having their surrogates “override” patients’ ADs; some of these data have been published recently.,

We might diverge from Dr Terry’s assessment in that we do not think that ADs should be “ignored.” To suggest that they should be ignored could imply that ADs are not useful in the clinical context; that they are not integral in determining patients’ preferences. Rather, we advocate for a more nuanced interpretation: adhering to ADs should be the default practice, and it would require satisfying three of the four elements in our conceptual framework to “override” ADs. This is a high threshold. That is, ADs should serve as general guidelines, even when we have reason to believe that patients may not want them to be strictly interpreted, and our framework ensures consistent application and fairness in how surrogate-AD discordance cases are approached.

Like Dr Terry, we believe that preventive ethics approaches can mitigate ethical problems that occur “downstream” once patients are in the intensive care unit. However, we suggest slightly different approaches than he. First, in keeping with what we discussed previously, we think the question should not be, as he suggests, “Would you want us to ignore your living will if your loved one disagrees with it?” and instead should be, “Would you prefer your advance directives to be strictly followed or serve as general guidelines? Second, we think patients’ “narratives” should supplement and be attached to patients’ ADs. These are responses to questions about the burdens the person is trying to avoid, what is important to them, and at what threshold they would consider continued aggressive measures to be unacceptable. Ultimately, we would like to shift the emphasis of ADs away from treatment modalities and more toward patients’ stories and specific burdens they are trying to avoid. This should allow for making decisions that are congruent with patients’ preferences.

References

Bruce C.R. .Bibler T. .Childress A.M. .Stephens A.L. .Pena A.M. .Allen N.G. . Navigating ethical conflicts between advance directives and surrogate decision-makers’ interpretations of patient wishes. Chest. 2016;149:562-567 [PubMed]journal. [CrossRef] [PubMed]
 
Terry P.B. .Vettese M. .Song J. .et al End-of-life decision making: when patients and surrogates disagree. J Clin Ethics. 1999;10:286-293 [PubMed]journal. [PubMed]
 
Mayer PA, Esplin B, Burant CJ, et al. In my best interest: characteristics of completed comprehensive advance directives at a Veterans Affairs medical center.Am J Hosp Palliat Care. In press. PII: 1049909115609576.
 

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References

Bruce C.R. .Bibler T. .Childress A.M. .Stephens A.L. .Pena A.M. .Allen N.G. . Navigating ethical conflicts between advance directives and surrogate decision-makers’ interpretations of patient wishes. Chest. 2016;149:562-567 [PubMed]journal. [CrossRef] [PubMed]
 
Terry P.B. .Vettese M. .Song J. .et al End-of-life decision making: when patients and surrogates disagree. J Clin Ethics. 1999;10:286-293 [PubMed]journal. [PubMed]
 
Mayer PA, Esplin B, Burant CJ, et al. In my best interest: characteristics of completed comprehensive advance directives at a Veterans Affairs medical center.Am J Hosp Palliat Care. In press. PII: 1049909115609576.
 
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